I try to be pretty open about things in my blog, all while keeping some privacy as well. This post kinda goes together with my last post in a sense, and it's something that has been a bit difficult to talk about, but here goes.
For those who don't know me or haven't read my blog for all that long, I used to be married. In the autumn of 2010 my husband and I separated and filed for divorce, at that time I did not feel well at all emotionally, I was probably even depressed for a while and didn't quite know what to do with myself or my life.
One evening, I just got in the mood to listen to old music from my childhood and before so I searched on YouTube for ABBA and Queen, as I was browsing through the list of songs, a song called The Show Must Go On by Queen came up in the list and I listened to it, and I listened again and again and again. There was just something about that song that caught me! After a little while I realized there was a message in that song and decided to look it up on Wikipedia to learn more about the history around it because both the melody and lyrics were so powerful!
I kept listening to that song many times and kept analyzing it more and more in my mind, along with listening to more songs from Queen, songs that were less known than classics like Bohemian Rhapsody, We Will Rock You, Radio Gaga, Another One Bites The Dust and We Are The Champions which you hear on the radio most frequently.
I came across the song Who Wants To Live Forever, a song which pretty much brought me to tears because it's just so beautiful and more and more songs I listened to.
Slowly but surely something started to happen within me, I started to see the light again and I felt inspired, inspired to do things or at least try to, the feeling of hopelessness left me and I got back to life again in a sense.
It was also at this time of my life that my body had been deteriorating for a while, and the suspicions of Ehlers-Danlos Syndrome had started to grow, I've always had symptoms of it, but it wasn't until 2010 that it began to affect my life full time. But even the prospect of having a genetic, incurable disease couldn't bring me down mentally when I had found the power of music!
Weeks went by, I continued to listen to the music, discovering more songs I had not heard before and diving deeper into the ones I really liked. It kept me going while battling increasingly worsening physical symptoms, keeping up at work became more and more difficult due to the amount of pain I was in and the level of fatigue I was battling constantly. But the music kept me going, I kept working for another half year before my boss finally called me into his office and I was laid off due to my health, at that time I was already in such a bad conditions I couldn't take another job, and I have not been able to work since. We're now in summer of 2011, the divorce from my husband was already history and I had pretty much moved on. Losing my job was a slap in the face of course, I loved my job, but at the same time I knew my boss was right, I could no longer do it.
But the music kept me going! It was like a guiding light for me and I had ideas and dreams that started to grow on me already in 2010 about things I'd like to do, much of it awareness projects for HIV/AIDS after I read about how Freddie had kept his condition a secret until the very end of his life, only very few people knew before that, that he had AIDS, I have to admit though, I'm still searching for a way to implement those ideas that I have, but hopefully one day, and hopefully those ideas will help end the stigma and make life better for those who live with HIV today...
Fast forward about a year, I had moved back to my hometown in Sweden due to it no longer being safe for me to live alone so far away from my family, after several episodes of almost passing out in the shower in Copenhagen from POTS (Postural Ortostatic Tachycardia Syndrome) or some other Dysautonomia, my parents had had it and wanted me home so they could easily come check on me if needed! Anyways, back in hometown, I finally got my diagnose of Ehlers-Danlos Syndrome, by the time I was diagnosed it was more of a relief than anything else to have it on paper, getting the diagnose did not bring me down emotionally, and then there's always the song, The Show Must Go On, and the show must go on- You can't just give up and kick the bucket or sit in a corner and pity yourself! You have to get out there and live your life to the fullest the best way you can! The show must go on, regardless of what life throws at you, you have to face it with a grin and do the best of the situation you're in.
Whenever I feel a bit down and need a pick me up, or just generally want to listen to great music, The Show Must Go On is my first choice when it comes to songs even to this day, almost 4.5 years later. It gives me the strength to handle my own health situation, it inspires me and makes me want to do good in this world. It remains my favorite song that has ever been written!
My Ehlers-Danlos Syndrome may be wrecking havoc with my body, but it can't touch my mind! I'm battling neck issues that may require stabilizing surgery in the future, chronic pain that would make a lot of people beg for mercy, joints that may slip out of place every so slightly even from a minor movement (my right SI joint is partially out as I'm typing this) and my photophobia (light sensitivity) has gotten significantly worse lately, now at the point where even a weak light will feel bright in my eyes and I've just had my eyes checked to start wearing contact lenses again so I can wear sunglasses as much as I need, I'm also planning on getting tinted prescription glasses so I can give my eyes a more comfortable light even when not wearing contact lenses, and I'm currently looking at different sunglasses as well as I only have one pair at the moment that I really like and those are sadly beginning to get pretty worn out as I've had them for many years.
But whatever EDS throws at me, I'll face it with a grin, I'm never giving in, on with the show!
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